So, where to start. Well...my beautiful mother MaryAnn Amaral was diagnosed with Lupus when I was 14 years old. I still remember the day she was told. I had gone to the doctors with her that day. She had been told she had Rheumatoid Arthritis for several years already, and was being treated as such. Apparently, her condition worsened and she was tested further. My mom lost her mind that day. I remember having to grab the steering wheel of our Plymouth Turismo so she wouldn't drive us off the road and into a wall. I didn't understand why she was so upset. After all, it's not like she was told she had CANCER or something life threatening like that! She looked fine! What could possibly be wrong with this woman who was always so strong, the best cook on the planet and the hardest working mother alive? After that, I heard mom cry on a daily basis and never really knew why.
Flash forward 12 years later. It is 1999 I am pregnant with my now 12 year old son, and second child Aaron. I am having horrible pelvic pain that can only be described with the comparison of a broken pelvis. I cannot walk and my legs are swelling. I have swollen arteries and vericose veins developing in my pelvic region. It is far too dificult to stand for long due to the pressure in that area. every part of my body is swollen including my nose! I figure it's just the way I carry my babies, because the same thing happened with my first child Angelica only five years earlier. I was now 26 years old. My husband was having to help me get around. The doctors told me it was because Aaron was lying on my ciatic nerve and that the pain would subside after birth. I had no choice but to believe them. Aaron came into the world quite simply. It was an easy delivery with no drugs and he was a big healthy boy. I however, would continue to have trouble walking for several weeks after his birth and added to that, my elbow joints would begin to swell and pop in and out of joint now for several months to follow. I ran several low grade fevers and never knew why. One day, I was driving and my vision started to go dark. I pulled over and sat there a few minutes until I could get myself to the hospital down the street. I walked into Kaiser and they checked my blood pressure. They were shocked to find that it was in the 40's and I had driven myself to the hospital. Knowing that Mom had Lupus, my doctors did blood tests to see if it was possible that I had it. All tests came out normal. Nobody ever found the reason to that episode either. After a while, symptoms subsided and I just continued to live and care for my family.
Flash forward 6 years later. It is 2005 and I am pregnant with my now 6 year old son D.J. I am at work repositioning a candy fixture when I feel a sudden gush and run to the bathroom. I am bleeding at 2 months pregnant. I rush to the hospital where I am eventually told that I am at risk and I am pulled from work and placed on bed rest. The further along in the pregnancy, the worse things got for me. The pain was unbearable at times. I was extremely weak and fatigued. I had trouble staying asleep and the most aweful heart burn you could imagine. The pelvic pressure was immense and excrutiating when I would stand for long periods of time, so I was down for the most part.I constantly thought I would lose my child. Something just wasn't right and I could feel it. Vericose veins were popping out all over my body. My chest and torso, calves and ankles. They felt broken and unable to bear weight. This would, without a doubt, be the last child for me. D.J.'s delivery was harsh. My water broke and then resealed itself and I was given two bags of pitocin which did nothing to bring on the contractions. The following day, they decided to break my water which started the labor. It was hard labor and I had no time to breathe between contractions. I pushed D.J. out so quickly, that he slipped through the doctors hands and bounced off the collapsable bed below.
My body was destroyed by this delivery. All of the pain I suffered through this pregnancy, was supposed to subside after delivery. This time, it didn't. The pain got worse. The broken pelvis feeling was back with a vengeance. Only this time, my hips and back were hurting badly as well. I had trouble walking again. Soon after, my shoulders and arms to my fingers started aching badly and stiffening up on me. My arms would get stuck in such a position that it would appear I had polio. My neck was soon to follow. Again, I was tested for Lupus and nothing stuck out that would be cause for concern. My blood just did not tell the story. Everything was wrong, yet my blood was perfectly normal.
About a year later, I had taken a part time job in the evening to help ends meet. I was a waitress at a local restaurant. The pain in my left arm became so excrutiating, that I literally dropped an entire tray. I went home that day and called my doctor. I was referred to an orthopedic surgeon by the name of Dr. Basil Besh. He did X-Rays and MRI's to find several small cysts in my left wrist. He stated that he did not believe them to be the cause of such pain because where they were, and the nerves they were near, could not send pain all the way up to my shoulder. I told him I wanted them out because I believed they were. After I awoke from surgery, I was told they had done a complete synnovectomy (removing affected tissue from under the skin of my entire left hand.) I had no idea what that meant. The incision got seriously infected and was not healing well at all. I was losing mobility of my left wrist and was sent to physical therapy. Dr. Besh told me that the tissue they removed, was sent off to pathology because of it's "suspicious nature." Pathology returned a finding of "Chronic inflammatory condition with a Lupus Like presentation." It took the cutting of flesh and removal of tissue to find this condition in my body. Lab tests were done and still...my blood told no story of what was happening to me. I completely lost mobility in my left wrist anyway...despite physical therapy. That was when I was referred to my current Rheumatologist Dr. Neuwelt.
Dr. Neuwelt was my mothers Rheumy as well. My mother was a subject he followed for a book he was writing. She was a part of the clinical trial to help find the cure for Lupus. He ran a battery of blood tests on me with zero findings for a long time. The only thing that kept him holding on to me as a case, was my symptoms and X-rays. The X-rays showed issue with my connective tissues and I was given a temporary DX of a Spondylo Arthropathy or (Ankylosing Spondilitis.) That would mean that my soft tissues between my bones could harden and calcify into bone thereby fusing my joints and rendering me cripple and in a wheel chair. That is what I was treated for first. He did not believe that I had Lupus but never forgot the Pathology findings from my surgery either. I was treated with Prednisone (20 mg. per day) and Plaquenil (400 mg. per day) I continued to get worse and fast. When it seemed as though things could not get worse, I was put on Methotrexate (7 pills every Tuesday) This is a biological medication used to treat Cancer patients as well. It is a chemotherapy drug. I got so sick on this med. I was in and out of the ER every other day SCREAMING! I remember begging them to just put a bullet in my head! I hope I never have to suffer that kind of abdominal pain again in my life! It was as if someone had stuck a white hot poker through my gut and was stirring it around. I was losing my hair and swelling up like a balloon.
I could not go outside in the sun or I would swell and get a rash with blisters. It would feel as though someone had poured gas on me and set me on fire. Forget the occasional glass of wine or margarita...the smallest amount of alcohol and I'm a blowfish. My body temperature seems to freak out occasionally. I will feel it coming on though. My face will get hot, turn reddish purple and swell. My blood pressure over the last few years has gone wacky. It will go from really low to high and then normal. My norm is about 111 over 74 and I would just be on the couch and suddenly it would shoot up to 138 over 92. No reason at all. At times, I will feel my face starting to swell, then suddenly it will just droop on one side like I had a stroke. This has happened right in front of ER personnel as well as my own rheumy recently. I was rushed off to scan and told each time that "nope...no stroke." The result is always the same. A doctor, standing by my side scratching his head and saying "hmmmm...." My head will start bobbing out of nowhere. I will twitch and jerk sometimes for no reason and my memory is going quickly. Yesterday, my entire body went numb starting with my left arm and both sides of my face. That moved to both legs while at a Christmas parade that caused me to fall (Thank God Joe was standing there!) Then, in bed last night, my whole body went numb and tingly and started to hurt. The wierd thing is that my extremities went ice cold while my face went hot and I got that malar rash on my face. I have been suffering with chronic acid reflux and the last I knew three to four years ago, I had ulcers in my esophagus from it. Protonix does not work. I eat Tums like they are candy. My skin hurts :'{ I call it painful hugs because the littlest of my children cannot hug me without hurting me. My fingers hurt and twist and get stuck like my arms. I can't remember a conversation I had two days ago. I get sores on my scalp and in my nose that seep and burn. I get black-ish ulcers on the inner cheeks of my mouth. My eyeball swole up with fluid and bugged out with tunnel like vision and wrinkles all over the surface of my eye like a huge blister. I get severe night sweats now and wake up soaked on occasion. My hips will swell and feel disjointed to where I cannot walk. My knees have joined the party now, and feel like they will hyper extend the wrong way if I walk too fast. I cannot climb stairs. I get constant charlie horses in my calves. I am weaker than I've ever been. My pelvic floor failed and I had to have reconstructive surgery on my bladder and bowel and a partial hystorectomy because my uterus could not support itself any longer. I am on high dose blood thinners (13 mg. daily) because I had a huge pulmonary embolism to my right lung in June, that almost killed me. I suffer extreme fatigue...mood swings, vision problems and difficulty concentrating. Repetition is impossible. If I repeat movements again and again, I lock up and atrophy. I often get confused about what I was doing and lose my train of thought. Now, I am told that he believes that I have SLE and Poly Arthritis as well as A.S, Fibromyalgia, G.E.R.D. and Barrett's disease. I will also be checked for CNS Lupus (Central Nervous System) due to my vision, memory and fatigue involvement, PNS Lupus (Peripheral Nervous System) due to the nerve involvement and ANS Lupus (Autonomic Nervous System) due to my bodys inability to control BP, body temp and numbness/tingling. It's a start unfortunately. My mother died with 31 different diagnoses'. This seems to be genetic.
My problem is this. I watched my mother suffer and die in agony from the very disease I fight today. The end of life doctors treating her, told me that the reason she died so painfully and it was so prolonged was because of the amnount of medications she took in her life. That included steroids and pain killers. This is why I refuse to stay on the Prednisone and I do not take pain killers unless I am in excrutiating pain. My family history shows a propensity for drug addiction. Therefore, I will not "go there" just in case. I want the pain killers to work for me when I need them most. That was not the case for my Mom. She practically died screaming. She knew her body was rotting away and she felt the whole thing. NOT OKAY. I don't want to go down like that. I will never forget what my mother suffered through and how horrifying it was. I will NEVER put my kids through having to see that horror and live with that memory EVER. So I don't know what to do about my own treatment now. I am so afraid to go back on biologicals because I believe they were killing me. My babies are way too young to lose their momma already. My 12 year old son has already lost his dad this year. Enough is enough.
Muscle Inflammation
Mouth sores
